Monday, February 22, 2010

Tongue tied and twisted

The topic for the February Carnival of Breastfeeding is "Write a post that tells how you overcame a breastfeeding challenge". This post will be published on Monday, February 22nd, the day of the Carnival. As is the custom with the Carnivals, each carnival participant will put a list of links to all the other carnival posts at the bottom of their own post. This means a certain amount of updating throughout the day, so, if you are reading this post on the 22nd, please do check back later to see whether any new links to new carnival submissions have appeared at the bottom. Here is my own story.

I leaned in to look into his mouth where she was pointing. I'd barely heard of tongue tie, certainly never in the context of breastfeeding. I don't even remember my reaction, other than that I was impressed by her thoroughness; a tongue tie certainly wasn't something I'd have noticed or picked up on any of the many babies I'd done baby checks on during my career.

"But it shouldn't be a problem with breastfeeding," she assured me. "Look, he can - just about - get his tongue to cover his lower gum. So that'll be all right."

Oh. Good. I was glad to hear there wouldn't be any problems. The pain I'd been getting on trying to nurse him was obviously just down to our mutual inexperience - I'd keep pestering people for help with the latch and we'd sort it out eventually. It never occurred to me to question her; after all, she seemed to know exactly what she was talking about, and her explanation made sense.

It therefore took another two or three days of me reading all the advice I could find about how to get a baby well latched on and repeatedly asking different people for help (fortunately, the reading I had done before giving birth had at least left me aware that nursing a baby wasn't supposed to be this painful, and so, even when the nurses I first asked about it brushed aside my concerns with blithe assurances that the latch looked fine, I knew there had to be some problem that needed identifying and dealing with, and kept right on asking) before my usual midwife noticed the tongue tie and put together the two and two that I should have added already. The other midwife had been wrong, and my son's overlong frenulum was indeed causing my problems.

The problems that tongue tie causes with breastfeeding, you see, aren't just due to the baby's lower gum not being properly covered by the tongue. They're caused by the tongue being unable to work as efficiently in sucking - which means that not only does the baby have a lot of trouble getting enough milk (of which more later), the nipple isn't pulled as far back into the baby's mouth, and keeps getting caught on the gums. This produces a sensation approximately akin to having your nipples pried off with a chisel.

I was very relieved to have an answer - by that time, I was starting to wonder whether perhaps I might just be the first mother in recorded history whose baby just wasn't able to get the hang of latching on no matter how hard we both tried. Unfortunately, for practical purposes, it seemed that having found the answer wasn't going to make much difference.

Although the cure for tongue tie is as simple as the problem - one quick snip through the extra bit of frenulum to free up the tongue to move properly - there does need to be someone available who has the know-how and the willingness to do it. In Clacton-on-Sea, the area I lived in at that time, there wasn't. Because, the midwife explained (and it was clear that she was as infuriated by this as I was), the local paediatric team didn't consider early frenulotomy to be a procedure worth funding. Never mind that it could make the difference between breastfeeding and not breastfeeding successfully - that wasn't something the paediatric department saw as a priority. She would certainly refer me, but she could tell me from sad experience that what would happen would be that I'd get an appointment for several weeks' time and they'd tell me to put my baby on the bottle instead. If I wanted to get it snipped, I was going to have to take Jamie to Mervyn Griffith's team in Southampton.

I'd just had a baby, my world was in a spin, and I could barely get my head around the idea of getting to the end of the road, let alone Southampton. I chickened out, and went for the option of local referral. Maybe I could somehow persuade them to help.

She put the referral through, and I was sent a date for when my son was five weeks old and left to struggle on alone in the meantime. (The midwife and I agreed that she might as well discharge me - she'd done everything she could, and we both agreed there wouldn't be a lot of point in her dropping round regularly just for me to tell her that breastfeeding still wasn't going well.) I didn't try to fight for an earlier appointment date - I'd worked in the NHS for years by that time, and accepted the inevitability of long waits for everything in the same way that I accepted the inevitability of rain. I wondered helplessly what I'd say to the doctor when I did get there, how to convince someone who didn't think breastfeeding was important, but in the end I didn't even try. Nursing was becoming a lot less painful, and I figured Jamie must be getting the hang of the latch despite his tongue tie. If paediatricians didn't care about cutting tongue tie even when it was causing huge problems for a breastfeeding mother, what hope would I have of persuading them if I had to admit that it wasn't causing too many problems any more? I gave up. I wrote to the hospital and told them I was cancelling the appointment as things were going better.

And, from the point of view of the pain, they were - it had now settled. I didn't connect any of the other things that were going on with the tongue tie. My son went on nursing non-stop. I hardly left the house for days on end, every shower I took was a mad race to get finished before he could scream too much for food, and my own meals were eaten in instalments in between feeding him. I accepted all this as a difficult but necessary part of successful
breastfeeding - after all, I'd had it drummed into me often enough by
pro-breastfeeding sites that it was normal for newborns to want
to nurse all the time and that I shouldn't try to limit his feeding at
all for fear of causing irreparable damage to my milk supply and
forever ruining my chances of achieving the Holy Grail of exclusive
breastfeeding until six months. The amounts of weight he was putting on sounded disappointingly tiny compared to the amount of effort that was going into achieving them, but the health visitor I saw for his weigh-ins assured me that his weight gain was fine and that it was normal for a breastfed baby to gain less than formula-fed babies. Since I already knew that last fact to be true, and since she spoke with such airy certainty, and since my perusal of breastfeeding sites had unfortunately never included paying too much attention to the actual numbers given as amounts that breastfed babies should be gaining, I accepted her reassurances unquestioningly. Nursing was easier, I was being assured Jamie was gaining weight properly, I'd been told in the first place that his tongue tie was minor - obviously the tongue tie problem had resolved and the current problems were just normal early nursing hiccups that I had to grin and bear until they improved. Which of course they would - didn't all the breastfeeding sites say so?

At his five-week check the health visitor assured me again that I was doing fine and told me that I didn't need to come back for another three weeks. She didn't bother to plot his sequential weights on the graph provided in Jamie's health care record for that purpose, and neither did I until just before his eight-week check, so neither of us realised at the time that he'd actually dropped from the 75th to the 25th centile in those five weeks. In the next three weeks, he stopped gaining weight altogether. When he was weighed again at eight weeks, he was below the 9th centile. Even the health visitor seemed to be running a little short on breezy assurances at that point.

According to my diary, I did ask the health visitor at this point whether this could be the tongue tie, but she didn't think so. Instead, I was sent home with the standard advice to go to bed and nurse him as much as possible. Thinking about it now, I realise that the point of this old standby is to deal with the sort of situation where the mother's been so busy rushing around doing other things that she's been unintentionally limiting the baby's feeds, and that it was completely inappropriate for a mother who already was nursing as much as possible, but at the time I took it seriously and tried my utmost to figure out how I could curtail my very limited day-to-day activities even further. Since I had, by that point, finally reached the stage of starting to leave the house for regular walks and had even dared to consider venturing into the nearby town for a change of scene that I was only just beginning to realise how desperately I needed, this advice plunged me into despair - it seemed the only way I had a hope of salvaging the breastfeeding was to submit myself to terminal cabin fever. And would that even work? I was doing everything I was supposed to do - nursing all the time, not limiting his feeding at all, feeding on cue - and I still didn't seem to be making enough milk. I felt gutted.

After a couple more days of trying to make myself into a virtual invalid, feeling scared to carry the baby from one room to the next in case this would
be too much exertion and limit my milk supply still further, and constantly dwelling on what on earth could be going wrong and what I could possibly do about it, I was becoming more and more suspicious that - whatever anybody else said about it being minor - the tongue tie might be the problem here. After all, couldn't tongue ties cause poor sucking and lack of weight gain? Then again, I seemed to be getting conflicting advice from people I knew, or even from articles I found on PubMed, as to what to do about it. And, of course, getting it cut was going to be no small matter in practical terms, because of the need to find someone and drive there with a baby who couldn't always make the fifteen-minute drive to the local supermarket without screaming for a breastfeed. I agonised over the best course of action.

My husband told me that I should make a decision one way or the other, stick to it, and stop driving myself crazy over it. While I suspected a subtext of 'Stop driving me crazy over it', I could see that, either way, it was sensible advice. Then I found the Hazelbaker Assessment Tool on line - a checklist designed to evaluate the severity of tongue tie. The one I found wasn't in the easiest format in the world to use, but I scored Jamie's tongue tie as best I could and was very surprised to find out that, despite what people had been saying all along about the tongue tie being minor, it scored as 'significant' on both the appearance and function subscales. Objective numbers were the backup I needed. I was going to have the tongue tie snipped.

The next step was to figure out how and where to get it done. There was one piece of good news here - I was at least not going to have to take Jamie all the way to Southampton (I was desperate enough to do so by that time, but it was a relief not to have to). One of the women on the breastfeeding group I posted to on-line had found a list of other providers in the UK who could do it. It looked as though I could arrange something in London, which would be substantially less difficult although still dauntingly so. I started phoning around. Meanwhile, I dug out the pump I'd ordered for going back to work and started trying to pump at the end of each of Jamie's feeds, getting Barry to feed the collected milk to him in the evening. The difference was immediate - he became noticeably more settled and started sleeping for longer stretches at night. And, finally, I struck lucky on the tongue tie snippage front. One of the infant feeding advisors phoned me back with news of Peter Weller, a surgeon she knew of in Basildon Hospital, Essex - about an hour's drive from where we were at the time - who cut tongue ties. He wasn't (at the time) on the list I'd been given, but she'd met him once at a conference, they'd chatted briefly about the subject, and he'd been surprised to hear that anyone was raising problems with cutting a tongue tie, since he himself was quite happy to do it.

I rang Mr Weller's secretary, and she told me that normally she would have been happy to book me in, but Mr Weller was just about to have surgery himself, and, after that coming Friday's clinic, he would be on sick leave for eight weeks. Damn. Oh, well, back to trying to arrange somewhere in London, and I supposed I was no worse off than I had been and at least better off than when I'd thought I'd have to go to Southampton. Then I thought, what the hell, why not give it a try, and rang his secretary back to ask whether by any chance he could squeeze me in at the end of that Friday morning's clinic, since it would only take a few minutes to do. A bit surprised, she said she'd see what she could do, checked with him, and rang me back to confirm that if I could get a referral letter from my GP in that time he'd be happy to see me. I got the referral letter at Jamie's eight-week check the day before, and we were all set to go.

After nine weeks of trouble from the tongue tie, the snipping of it was so simple I didn't know it had happened until it was over. Mr Weller got me to sit knee-to-knee with him with Jamie held between the two of us, his body on my lap and his head on Mr Weller's lap, and fiddled around briefly in his mouth with one hand to find the right place, holding the scissors ready in his other hand. I was still bracing myself for the moment of snippage when Jamie's indignant wail told me it had already happened. I hastily swung him up and around onto my breast, babbling heartfelt and probably incoherent thanks to Mr Weller and handing him the chocolates we'd brought along to thank him. Oh, yes, and remembering to ask him whether he would be OK with the idea of being added to the list as an official frenulotomy provider. (He was. As you may have noticed, he's on the list now - that was due to me contacting the BabyFriendly initiative and adding him.) We gathered up all our stuff and headed out to the waiting room for me to go on nursing Jamie, which I already knew was the recommended thing to do immediately after a tongue tie, to ease the baby's pain and help it to heal quickly. Jamie went through a few minutes of "Something painful just happened! Waaaah!! Oh - wait - nice breastmilk. Yumyumyumyumyum. Oh - wait - something painful just happened! Waaaah!! Oh - wait - nice breastmilk..." before the 'nice breastmilk' part of it took over conclusively and he settled down to sucking. I let him have a long feed, and we headed back home again.

But it wasn't, alas, the end of the story. I'd left it too long. We'd wasted the crucial early weeks when I should have been building up my milk supply and Jamie should have been getting the hang of how to suck. A week later, the weight check with the health visitor showed that Jamie had only gained two ounces since his last weighing, bringing him down to the second centile. (The health visitor still kept assuring me he was fine and that breastfed babies just gained at a slower rate than formula-fed babies, that was all. I tried to talk to her about it at a later stage, but she never did show any sign of accepting that there was any problem, that any of this could be anything to do with the tongue tie, or that there might have been anything wrong about her dismissing his lack of weight gain in the way she had.)

Barry suggested giving him formula supplements until his weight came up. Primed by lactivist websites, I freaked out - formula?! Didn't he realise we were meant to avoid supplementation at all costs? Didn't he realise the critical importance of keeping babies exclusively breastfed for six months? In the face of my immovability, Barry compromised - we'd have a two-week trial of supplementing Jamie with as much extra as I could manage to pump, and, if that didn't work, we'd revisit the question of formula.

For the next fortnight, I felt I was in a frantic race against time to get Jamie's weight up. My life narrowed to pumping and feeding him. A diary entry I somehow found time to type during that fortnight reads "Feed,
pump, stash milk in fridge, feed, wash pump parts, feed, repeat in
random order. I'm pumping eight or nine times a day, double-pumping
when Barry can take the baby, single-pumping when I'm holding the
baby, passing the baby and the pump back and forth in a peculiar
juggling act. Logging the times and quantities in my notebook,
logging the amount I freezer-stash at the end of the day and (if I
can work it out) how much has gone into Jamie. I made it out to the
library in Clacton this morning - it was the first time I'd been out
of the house since the baby clinic six days ago. I'd hardly even
noticed."

At first I also fretted about the dreaded Nipple Confusion that can afflict mixed-fed babies (they get confused about the different sucking techniques needed for breast and bottle, and end up preferring the bottle and refusing the breast - it's been the death knell to many a breastfeeding relationship), but on that point, at least, things were all right - in the time it took the Lact-Aid I'd ordered to arrive, Jamie had made it quite clear that, when I was around, he preferred breastfeeding. He would only take a bottle from Barry. When I tried, he turned his face determinedly to my chest - come on, Mummy, don't play silly games, I know you've got the proper stuff in there. Knowing he preferred breastfeeding was a boost I badly needed, and one less thing, at least, for me to worry about (I was too superstitious ever to return the Lact-Aid - I ended up passing it on to the local La Leche League team). But the constant struggle to make enough milk was a continued worry. I went on pumping, and feeding, and counting ounces, and obsessing, and wondering dazedly at the devastation wrought on my experience of new motherhood by one little piece of skin.

It worked - sort of. I pumped enough extra to get Jamie's weight increasing again at a normal rate. I never did pump enough for him to catch up to where he should be. We limped along as we were until I went back to work when he was four months old, at which point I continued doing my best to pump but he rapidly ended up on solids and formula supplements. He went through a major catch-up spurt (his growth chart for the early months is almost a right-angle), and, by the time he was six months old, he was happily settled on a mixture of breastfeeding, milk I pumped at work, formula supplements, and purées. I'd even reconciled myself to not having made the magic six-month mark for exclusive breastfeeding, after actually reading the WHO guidance on the subject and finding that, for all the fuss that had been made about it, there wasn't actually any evidence at that time that exclusive breastfeeding for six months had any benefits over exclusive breastfeeding for four months. (The study showing a slight benefit for six months exclusive breastfeeding in terms of reduced risks of chest infections was still a year away at that point.)

I never did reach the point of being able to relax fully about breastfeeding, but I kept breastfeeding, in the end, until Jamie was sixteen or seventeen months old. I didn't achieve the goals I'd originally held, but they aren't goals that bother me at this point; I kept breastfeeding despite all the odds, which is what I cared most about. Technically, this is a success story.

But I never felt that I 'overcame' that challenge. It overcame me. It has never felt like a success story in my mind - it's too tainted with the dark, bitter taste of shame and regret. I regret so many things about the way I handled the situation. I should, of course, have taken Jamie down to Southampton in the first place, but I was overwhelmed enough by new motherhood that I can forgive myself for not doing so. But I regret not keeping a closer eye on his weight and picking up the problem much sooner. I regret not having a word with the health visitor's superiors about her failure to highlight Jamie's lack of weight gain to me as a problem or to acknowledge, when I raised the subject with her afterwards, that there had been anything wrong about the way she'd acted. I regret not writing the blistering letter I meant to write to the Primary Care Trust at the time about their failure to fund frenulotomies locally, doing what I could to change things for the next person. And I regret - deeply - the way I acted towards Barry, treating his wishes on how to handle the problem as an obstacle to be ignored or bulldozed past rather than as the valid views of the person with whom I was supposed to be sharing the raising of this baby. And I regret obsessing about it to the extent I did - not the
efforts I put in to keep Jamie breastfed, which I'm still glad of, but
the underlying belief that failure to meet my breastfeeding goals would
be a disaster past bearing. That marred my experience of new
motherhood, meant I could never simply relax and enjoy it for more than
snatched moments between the fretting. With all those regrets, the
knowledge that I succeeded in breastfeeding Jamie despite all the odds
feels like a Pyrrhic victory.

If you're having problems with breastfeeding, do consider tongue tie
as a possible cause. If you're being told that your baby's tongue tie
doesn't look too bad but you're still having problems, do go on
considering tongue tie as a possible cause, because a tongue tie that
looks relatively minor can still cause significant problems with the
function of the tongue. If your baby's tongue tie really doesn't seem
too bad, do keep a close eye on your baby's weight so that you can pick
up small problems before they become big problems. If your baby's
tongue tie is causing breastfeeding problems, do what you can to get it
snipped. If your baby's tongue tie has been snipped and you still seem
to be having breastfeeding problems, do consider whether it might not
have been snipped quite far enough - it's unusual, but not unknown. And if you're having problems with all this and could do with some support from someone who's been there and done that, contact me. I'll do what I can.

Links to carnival participants:

The Importance of a Babymoon - Angela talks about how her husband's help got her through the rocky early days of breastfeeding her third baby.

A Rough Start – The problems Whozat faced as a result of her
baby being born a month prematurely were compounded by a lack of good advice at
crucial moments.Despite this, she was
determined enough to keep going through some very rough times.

Clueless! Mamanadroit, in contrast, had the support and
advice she needed during the early days, when she needed it.It made all the difference.

When nursing takes longer - It took Boheime almost six months to get a diagnosis for her baby's problem, and another five before they were finally nursing smoothly. She kept going in the face of all the odds.

9 Comments

Great post, it's good to have it all pulled together, having not quite got the full story before. I had your tongue tie and low supply problem somewhere in the back of my mind when I noticed #3 had a tongue tie, which at first our doctor felt did allow enough movement for correct breastfeeding, but a few days later I woke up feeling extremly empty, thankfully, not being a first time mum, I knew this wasn't normal, even though some people tried to convince me it was. Getting the tongue tie snipped wasn't the full solution for us, but the experts seemed to think that her problems were related to it, something about it being something determined about 12 weeks gestation and then leading to abnormal use of the jaw muscles in utero and them needing to be retrained.

I've never really felt it was a sucess story, it wasn't the nightmare that you experienced, just something that happened and we worked through and despite the vanishing milk, I have a tendency to oversupply if I actually get stimulated, so I was producing for twins within a couple of days of pumping, which is more luck of genetics than anything I did. I am thankful it happened with #3 though because otherwise I don't think I would have spotted things so quickly.

I understand that breast-feeding is desirable and much better for the baby. But is it really that much better under these sorts of circumstances when it is making the mother utterly miserable and the baby is in real trouble from not gaining weight? Surely a bit of formula is less harmful than the damage that can be done by the lack of weight gain in the early months. Why was it so crucial not to supplement his feeding at all?
Your blog usually seems to be about working out what is best for each family overall, rejecting the idea of a 'perfect' way of doing things and the guilt that results from failing to achieve it. Why such a different philosophy on the subject of breastfeeding?

I don't think perfection and breastfeeding are words that should be used in the same sentence, maybe not even on the same page. I was overwhelmed with guilt at only reaching the 9 month mark with both kids before I stopped breastfeeding, but I really could not stand it one minute longer (kid number 2 had RSV at 10 days, and was fed round the clock, 2-3 minutes at a time, for the next 6 months). I regret beating myself up, I regret not getting out a bottle and a bit of formula, and I regret not involving my husband more. Mostly, though, I regret the million guilt trips from health visitors (one confessed later to not having kids and never having breastfed, for that reason). I think we genuinely do need to aim to do our best, and, when we have to, settle for 'good enough,' as your blog title suggests.

My son was tongue tied too and everyone treated it like it was no big deal-luckily I had such an ample supply and his tongue tie must not have been very bad, because we didn't need to have it cut. I wonder if some of the nipple pain could've been avoided though. We were told that basically and pediatrician could do it- I didn't realize things were so different in England! Good for you though staying so persistent and getting your baby the medical procedure he needed even when others thought you were wrong!

Fab article. I have a friend who is currently struggling with a possibly tongue-tied baby, and I'm sure she will find this helpful. In fact it has made me wonder if my daughter was ever so slightly tongue-tied, because a lot of what you describe - the endless nursing, the screaming if you leaft her without nursing for a moment, the slow weight gain and the unsettled sleep - sound a lot like her.

This article is a knock out. As a grandmother on the edges of the tongue tie struggle I can confirm the outer rings of worry and frustration of not being able to help. Thanks for sharing this. Interesting to see how the process of reflection on life's experiences continues over time. I do think that the particular health visitor in this case needed to go on an obligatory refresher course. GrannyC

wow. at the risk of admitting that i've been plowing through your archives for the past few days, i want to thank you for this story. to tell the truth, i think i followed a link here and read it closer to its publishing date, but as i wasn't even pregnant at that point, i just filed it away under "tounge-tie."

now that i have the baby and have had the gruesome experience of fighting my own denial and the willful ignorance and generally unhelpful attitudes of various practitioners about my own breastfeeding problem -- a stubborn, painful, and remarkably deranging case of Reynaud's of the nipple -- i find myself overcome with gratitude for your paragraph about shame and regret: yes. exactly. my story, like yours, is objectively one of triumph over an awful situation thanks to educational privilege and a perfectly appropriate but sadly unusual sense of entitlement to medical care. it's a relief to hear that i'm not the only one who sometimes sees it another way.

(my story is here if you are interested in reading it; format slightly jankety following its importation from blogger. http://bionicmamas.com/2011/04/26/better-living-through-chemistry/ )

I just went through the same thing that you did except with my second child after successfully breastfeeding my first. Mine has a twist though... my babies are 22 years apart. Devon's failure to thrive was excused out on my age (41), my thyroid (dying but working on it) and stress of a c-section. I wasn't buying it to the point of tears... I had successfully breastfed one child!!! I know that I can do this and I did not want to formula feed. At 3 weeks, I was heartbroken... he wasn't gaining weight, he was sleeping all the time and he fell asleep at the breast. I found ONE article on tongue tied and talked to my DH about it (since he is tongue tied) and he had a fit... two weeks later and changing to a doctor that had a lactation consultant, the doctor shouts out that Devon is tongue tied, snips him and I put him to breast! Feeling that we are all better now (I am a little less stressed now) some of the damage had been done to my milk supply. He still was not gaining weight as he was simply too tired to eat. I had to supplement him with formula. Luckily, I found an organic one without any sugar and crap in it and he loves it... he takes two 2 oz bottles a day. He started to gain weight like he should and is almost on track at 3 months. I was pumping too, but it seemed so silly! I would pump in the morning when I was really full only to feed it to him at night... I finally quit doing that last week and now it seems that I have more milk!! While I don't think that I'll be able to exclusively BF him, what is 4 oz of formula compared to the whole day?? That is what I had to come to terms with!

I feel for you and anyone that is going thru BF with a tongue tied baby... according to my lactation consultant, they almost always clipped children in the olden days and stopped when formula feeding became the norm... sad but true.